We are delighted to announce that IPWSO will be attending the @menararedisease Congress on 17–20 April 2025. We look forward to sharing information about PWS and strengthening our collaboration with those supporting people with PWS and rare diseases in the region.
We're looking forward to welcoming Alexandra Heumber Perry, CEO of @rarediseasesint at our upcoming Meeting. Alexandra will present on Access to Therapies for Rare Disorders in Low and Middle Income Countries. Register at: https://t.co/zg3C5u7IfD
A preprint of a new study on COVID hospital stays for people with PWS in the US is now available. A summary of the study with link to the preprint has been prepared by @fpwr and is available here: https://t.co/oPyO6juCHf
Just 10 days to go! Sign up today to learn more about potential new treatments for Prader-Willi Syndrome from 6 companies leading the way in PWS research.
Register free of charge here: https://t.co/E2Ur305h3i
Applications are open for the 2nd round of funding for PWS events and conferences and also for small projects in 2024.
With the amazing support of @friendsofipwso, we are able to provide support for small projects across the world. https://t.co/keq0k0ZmKx
#praderwilli#funding
Do you want to learn more about Research and Clinical Trials for Prader-Willi syndrome? Registration has now opened for our free online Research and Clinical Trials meeting on September 5th at 5pm, UK time: https://t.co/vzssU4jVRe
Applications are open for the 2nd round of funding for PWS events and conferences and also for small projects in 2024.
With the amazing support of @friendsofipwso, we are able to provide support for small projects across the world. https://t.co/keq0k0ZmKx
#praderwilli#funding
We are delighted to partner with PWSA | USA and FPWR to bring you the 2025 International Prader-Willi Syndrome Conference in Phoenix, Arizona in the USA. Registration is now open at: https://t.co/EKPTka9IFB
An international research project on the experiences of families with PWS is being conducted by Prof. Brian Hughes and Kristina Micallef Pule. Their aim is to gather information about family life and the challenges that can arise for family members. https://t.co/QQ5FqUHRi2 #PWS
We are nearly coming to the end of PWS Awareness Month! Thank you for all your shares and likes, it really makes a difference in raising awareness and getting people with PWS seen!
Still time to donate here: https://t.co/9sicMvivCL
#PWS#PWSAwareness#donatetoday#praderwilli
Chair of IPWSO Professional Providers and Caregivers Board, Lynn Garrick, thanks everyone for attending our caregivers conference. Thank you for participating, networking, learning and sharing best practices. #PWSCare24#PWS#Praderwilli#conference#community#family
The #PraderWilliSyndrome community is made up of diverse individuals, each with their own dreams, interests, and talents to share. During #PWSAwarenessMonth, raise awareness and share messages of hope for this amazing group of people. https://t.co/fNAzyCe0A6
Our final panel discussion allows us to discuss and share ideas about how we can improve communities, and support people with PWS. Here at IPWSO, we strive towards building communities, offering support and information when needed. #PWS#PWSAwareness#PWSCare24
We welcome discussion and peer networking here at #PWSCare24 - It's great to welcome so many delegates to our panel discussion on Self Determination and Self Control. #PWS#Praderwilli#PWScare24#praderwili